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DeedleDee
Rookie

USA
3 Posts

Posted - Oct 04 2012 :  5:43:11 PM  Show Profile  Reply with Quote
Hello Everyone,

I put caregiver in quotes because I really cannot be counted as one yet. My 69 year old Dad has COPD and Emphysema but he lives in another state right now. For financial reasons, my parents have to come live with us. Within a month, I will be traveling there and moving him back home with me. My mother is his current caregiver and does it by herself. Please excuse the length of this message as well as my lack of experience and knowledge. I have been reading for a few days and I'm just overwhelmed with all the new information. And thank you so much to those that are patient enough to read through this and offer any advice.

My father was diagnosed with Pulmonary Fibrosis, COPD and Emphysema in December of 2010. The pulmonologist actually gave him a measurement of a “mass” related to the fibrosis. At this point he basically gave up on life and accepted this as a death sentence. He stopped almost all activity and began to simply sit at home. This went on for a year until he saw a pulmonologist specializing in pulmonary fibrosis at the University of Miami and she advised him that he was misdiagnosed and that he only had COPD and Emphysema. He rallied briefly in this revelation and seemed remarkably better but quickly declined again. He has been steadily declining since.

I asked how one doctor could give the measurement of a mass and another doctor could say it was a misdiagnosis but that question was never posed or answered. My father continues to see the doctor that misdiagnosed him in the first place.

I feel that my parents’ way of handling this has certainly compromised what type of information I have but here are some things I do know.

He is on oxygen therapy via a concentrator at 5.5 liters and uses a portable liquid oxygen unit at 5 liters when he leaves the house. They refill this from a bigger liquid oxygen tank at home.

He only leaves the house once or twice a week, if that, but still drives when he does.

He refused physical therapy and will not budge on that claiming that he would simply sit out the entire session because he was unable to do the things they asked him to do.

He is clearly in denial, depressed and suffering from anxiety.

Short walks (within their small home) exhaust him, as does bathing and using the bathroom.

He uses a nebulizer with Brovana and another drug (I’m not sure of the name but it starts with a ‘B’ as well.)

I have seen his oxygen drop to the 60’s and his fingertips turn blue multiple times a week.

He has swelling of the legs and abdomen, especially with any activity (including just sitting outside.)

Night time and sleeping are often horrible. He wakes several times a night and has trouble sleeping at all.

I have never heard anything about a lung function test. As far as the stage, my mother tells me that they write “final stage” on his prescriptions for equipment. I’ve also never heard of an exacerbation but I’m assuming that is what he is having when his oxygen drops low.

He has never gone to the hospital for breathing related episode of any kind. He cancels a lot of doctor appointments.

He had a heart attack in 2008 and stints were put in; he takes Plavix. He has epilepsy since childhood and takes related medication for that (dilatin, phenobarbitol) in fairly low doses.

He is at a healthy weight even though he was losing weight for a while. He does experience nausea and a lack of appetite but his weight is staying pretty stable.

*From reading, I understand that denial, anxiety and depression are very common with COPD. I am not asking these questions to force my father to do anything. I truly think he should live the rest of his days on his terms, without nagging. But I do want to at least offer him safety and as much comfort as possible as well as options for quality care. I’m unsure about his current doctors and their commitment to his quality of life. I could be wrong, but that is my opinion from the things I know.

We will be spending at least a month with my parents preparing for the move. I guess I could wait until we get there and visit doctors, ask questions, etc. but I am simply too anxious. I hope some of you can offer some information and recommendations based on your experiences.

Here are my concerns/questions.

We have a 14 hour road trip to make with my dad. Based on his existing conditions and tolerance of sitting in a car, walking, etc., it looks like I have to travel at the rate of less than 3 hours per day. I am concerned about how to keep him with oxygen therapy (and have it covered by Medicare) for that long. The liquid would not last that long at his rate and I’m worried that they will not let us transport the concentrator. I know they will help us plan it but until I talk to them, I have no idea of any type of budget range (under a hundred? Hundreds?)

My father is so emotional about the idea of leaving his house; I am actually scared for his health with this move. I have to relocate him for the day we pack the truck because seeing his stuff go out the door will be too upsetting. I am worried that his anxiety and depression will affect his breathing to the point of a critical situation. Is it possible to use any type of anxiety medication with a pulmonary diagnosis?

Is 5 liters way too high? I have read so many stories of people that sound much more critical than my father on so much less oxygen. Has this delivery rate been part of what caused his decline? He coughs a lot and his sinuses are completely destroyed by this. He actually went for months without “humidity” and a new oxygen service provider final suggested it when my mother asked if there was anything that would help his cough. (I'm assuming that is what the little water bottle attached to his concentrator is?)

Do people decline this quickly? Does it sound like we’re in a critical time period? Some days I feel like he does not have much time at all and some days I feel like he could have years.

I’m assuming the swelling is congestive heart failure. Is there anything else that this could be?

Is anyone familiar with the services and doctors at Vanderbilt in Nashville? They are close to me and I imagine they would have the best care possible.

I’ve read a lot about “eating right.” What do they mean by this? Is there a special diet for COPD?

Is there such a thing as respiratory therapy (as opposed to physical therapy?) I feel like he is not at all familiar with the techniques I have read about on the internet.

Again, if you have read this whole message – thank you! I find it hard to give the initial bit of information but I look forward to hearing from some of you!

Bo H
Senior Member

USA
987 Posts

Posted - Oct 04 2012 :  11:08:56 PM  Show Profile  Reply with Quote
It is not at all that uncommon for someone to use 5.5 liters of supplemental oxygen but if I were you I would purchase an oximeter to monitor his oxygen saturation while on the trip. Most any Pharmacy has them for around $40.00. They just slip on a finger for a minute and you will be sure he is getting enough oxygen, plus it checks his pulse.

When you get him relocated( it would help before) he needs rehab or a good exercise program. Even if he is short of breath he can exercise as long as he uses supplemental and keeps his oxygen saturation above 90%. Walking is the best and easiest thing he cAn do. Get him some anxiety meds until he exercises enough to learn that being short of breath will not hurt or kill him. You need to ensure that he uses his oxygen enough to never let his saturation drop below about 90%. Low saturation causes right side heart problems (CHF) plus it damages all his internal organs.
There is no final stage as such, now one knows when its going to be final.

I am very Severe and I have only been to the ER 1 time in 27 years But I don't miss a Drs. appoint. If possible you should see his Drs., get copies of his Pulmonary function tests and other tests about his physical so you can be sure its safe to exercise. Again, if he wants to live the remainder of his life rather than just exist until his body finally gives up he will and CAN exercise. Probably the reason he is declining so rapidly is because he does nothing but sit.

The only way to know if 5 liters is enough or too much is to use an oximeter and check his saturation doing various things. His saturation should be between at least 90% and 99% at all times. He may not need but 2 or 3 liters or maybe none while sitting but he could need 5 or more walking or doing anything strenuous. Check with the Oxygen supplier he uses now and they can help with his oxygen needs on the trip. They can tell you places you can get refills or supply or have oxygen delivered to motels or maybe have something you can borrow for the trip. As far as driving 3 hours a day, if he is in that bad shape maybe you should think a little about it. He will be doing nothing but sitting , he might get bored but if he can't ride at least 7 hours you will be a nervous wreck. Check with his Doctors to see if his condition will limit the amount of hours of travel. I don't envy you but you have to do what you have to do. I know its new to you but COPD is not the killer. It can be disabiling if we let it be but We can do a lot to control our own destiny.

Good luck and if we can help with anything just ask.






Bo in Al
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DeedleDee
Rookie

USA
3 Posts

Posted - Oct 05 2012 :  11:15:59 AM  Show Profile  Reply with Quote
Thank you so much Bo. After I wrote last night I read a lot of other posts and your information has been so helpful.

My dad does have an oximeter and his levels drop with any activity (walking to the bathroom, stepping outside on the front porch, etc.) His levels stay good when he's at rest. He's seeing the cardiologist today to discuss the swelling and start telling the doctors about the move. They are also signing the paperwork so that I can also communicate with the doctors.

I know this is his choice and I respect that in so many ways. I am a 40 year old type 2 diabetic and I have teetered along the border of good and bad management of this disease for almost 13 years now. The other night, when I realized that my dad can decide how to manage his COPD, I decided the only thing I could do to help him is to make good decisions for myself. I can't change the world - only myself. So I am making the options available to him and hoping the energy of self-care just spreads through the house.

Thanks again Bo; you are an inspiration!
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Sandy07
Member

Canada
376 Posts

Posted - Oct 05 2012 :  11:26:51 AM  Show Profile  Reply with Quote
The Phillips Respironics EverGo has a very long battery life compared to others. When sitting in a vehicle he may not need it set as high as he would at home. As long as he is at 90 he should be okay. This machine can also be recharged and still be used when plugged into the cigarette lighter. I rented one from my supplier for a trip and subsequently bought one.

I used to quit exercising when I got short of breath after only a few minutes. I found out from these good folks here that SOB (short of breath) will not kill me. We should work our way thru it and past it. There are a lot of exercises that can be done while sitting. He should start with those and some walking around the house. Then keep adding more.

I would have all his medical info transferred to a new doctor. Then I would get him to this doctor. Someone new, with a different approach might be what your father needs. I don't know how tough you want to be with him but there should be a few rules at least. You shouldn't wait on him. He should do his own things, within reason I suppose. But he can get his own glass of juice. It will at least keep him mobile. Are you going to be home all day with him? Is your mother staying where she is? It must have been too much for her. Am I right? Don't become a prisoner. Right from the start I would make sure he knows that you are going to be leaving the house for dates, groceries, hairdo, movie. Let him get used to it right away.

You might want homecare for him if he doesn't bath/shower by himself....unless you are willing to do that sort of thing. If he has insurance of some sort they might cover it. You may need a different oxygen concentrator supplier. These are things you might want to check out before the trip.

Yes, there is respiratory therapy. It should be ordered by the doctor.

Yes, check with the doctor about something to ease his anxiety, both for the trip and after. Anxiety affects the breathing as well.

Yes, people can decline quickly if they don't exercise. A good reason to keep him moving. An infection can also be a setback. He should continue exercising or he may get worse and get pneumonia from inactivity. He won't be able to do much but he should do some things just to keep up the habit. It's always hard to get re-started otherwise. I speak from personal experience.

The swelling could be from a number of things. Perhaps pulmonary hypertension or side affects from drugs. Sometimes we are never sure. A doctor will likely check the swelling.

Try to make a list of questions that you want answered by the doctor. Ask if you can tape record the visit...just so you don't forget things. Some doctors are doing everything by computer and will give you a printout at the end of the visit.

About eating....we should all be eating the right foods. A diabetic plan would be fine for him too. Although not necessary, unless he's diabetic as well, that diet says to eat more often to keep blood sugar steady. For us COPDers it means that our stomach won't get too full and interfere with expanding our lungs.

Keep coming back here and reading. There's a lot of info to digest all at one time. As a problem comes up you can always ask here and someone should know. Good luck.

Edited by - Sandy07 on Oct 05 2012 11:51:40 AM
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DeedleDee
Rookie

USA
3 Posts

Posted - Oct 05 2012 :  12:55:20 PM  Show Profile  Reply with Quote
Thanks Sandy! This site is amazing. I guess one thing I will do is to point him here to seek some support.

He is not diabetic by the way. My mom, who has been morbidly obese most of her life and suffers from arthritis, has been taking care of him and waiting on him hand and foot. She is getting VERY overwhelmed but it's ironic... she is losing weight at a rate she never has before and physically, she feels better from HER new activity (taking care of him.)

They'll both be coming with me and I have my husband as well. We have a 2 year old so a mobile adult will always be home at one point or another other than just going out for fun, etc.

My 23 year old son is returning home in January to help with the financial aspect (he offered to come "rent" a room from us instead if living with roommates.)

I plan on speaking with everyone about the activity and what I have learned. I will not enable but I also will not nag so I hope we all find a good balance.

Between you and Bo, I already know I can come back to these two answers just for reference. There is so much info and help.

Thank you so much. It's been only a few days and I feel like I have learned so much.
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Granny Sue
Member

USA
262 Posts

Posted - Oct 05 2012 :  3:04:47 PM  Show Profile  Reply with Quote
You are getting off to a great start, Deedledee. You're getting lots of info, asking the right questions, getting things prepared before the actual move. I think and hope you'll find that your dad will have a change of heart once he gets moved and settled. There will be lots more going on around him, more people being interested in him, a grandson to play with. All these things will draw him out of himself, little by little. It sounds like your dad is very depressed and has pretty much given up (with lots of good reason!), but that can change. I went thru a very rough time living with some family members for over 2 years. It took me an entire year to come back to myself, but I'm so different now. I moved out a year ago and now live on my own (the best thing for me) with help from an aide who comes in 3 times a week. I was in a deep depression and I also was very sick and didn't realize it because my physical symptoms had changed when I moved out of the mobile home. I'm now more energetic and find I want to lose weight and get active - something I haven't wanted to do for a very long time because I just didn't care.

You are going to be a great help for your dad and mom. Stay connected here, as you've already discovered, it's a great place. If you ever need to, you can email me privately, if you just want to vent or cry or whatever. There are probably other people who will offer the same. Take care.


Granny Sue
If I knew grandkids were so much fun, I'd have had them first!
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